HomeStay are pleased to announce the completion of our first acquisition on the Central Coast of NSW. The acquisition will allow HomeStay to increase their service offering to the region. For more information and pre-registration of our service on the Central Coast please visit our website.

One year ago, Queensland’s Public Advocate released the “most important” report the office had ever produced. They found half of all disability deaths in care were potentially avoidable.

Today the independent government-funded body warns changes haven’t been made. Calling for the state government to act before looming NDIS changes cause “catastrophic outcomes”.

It was a 40-degree day and 68-year-old disabled patient Leon Streader had been sitting outside. Without a hat or sunscreen for most of the morning.

He returned to the “muggy stifling heat” of an inner Brisbane aged care facility with no airconditioning and only a few fans about lunchtime.

By 3pm on February 22, 2004, he was dead.

A fellow Pinjarra Lodge resident found the overweight man with epilepsy and high blood pressure, coronary artery disease and a mild intellectual disability slumped in his chair and called the carer when he couldn’t wake him.

That carer, Donna Norwood, told an inquest her shift had begun at 8am Saturday and wouldn’t end until 8am Monday. A 48-hour stretch she often served solo, caring for 30-50 residents.

It was the only inquest into a disability death in care carried out between 2009 and 2014. The period over which a damning review from Queensland’s public advocate, found more than half of 73 deaths were potentially preventable.

The review identified a “high degree” of under-reporting in the sector. But its author, public advocate Jodie Griffiths-Cook, said it was impossible to know how many deaths slipped through the cracks.

On March 17 last year, she urged the state government to use the report as a trigger to find ways to improve health services. And discuss minimum standards and improve reporting processes.

A government spokeswoman said it had undertaken a “range of activities” in regards to the review but Ms Griffiths-Cook’s successor, Mary Burgess, said nothing had changed.

“We are working closely with other organisations to improve the knowledge and capacity of health service providers. Those that work with people with disability,” the government spokeswoman said.

In the case of Mr Streader, the inquest did not blame the facility, Ms Norwood or co-owner Dr Nyst for his death. But did highlight problems with staffing levels, record keeping and medications. These were improved after the death. Dr Nyst could not be reached for comment.

One man in his 40s died after choking on a piece of cake he was given. Despite a meal plan detailing he eat only “soft food cut up into very small pieces and given to him gradually”.

There have been numerous strikingly similar scenarios at other facilities. A man with a history of choking, who’d been placed on a restricted diet, was left unattended and choked to death on a sausage.

In yet another disturbing incident, a man in his 60s on a soft-food diet, had been called to treat on several occasions. He was served a burger and chips for lunch. He died before the paramedics could arrive.

Of the 73 reported deaths in care over that period, most of them died overnight, and 17 weren’t even found until the next morning.

The report warned of “catastrophic outcomes” if changes weren’t made. Furthermore, the National Disability Insurance Scheme reported double the amount of people seeking disability care.

Public advocate Mary Burgess, who replaced Ms Griffiths-Cook in May, wrote to Premier Annastacia Palaszczuk’s office this month. Again urging action but was yet to hear back.

She said the report was “probably the most important thing this office has ever done”. She echoed her predecessor’s warning a year on, saying nothing had changed.

“What’s the worst thing that can happen to you? You die,” she said.

“It’s hard to imagine, there aren’t worse outcomes for people than what we’ve studied in this report”.

“It’s a really thorough examination of these matters and it’s just, well It’s disappointing but it’s also disturbing that a year later we don’t have any formal response to it.”

The government spokeswoman said the report annually on deaths in care would be in place from this financial year. The coroner would work to develop a specific investigation standard for disability deaths in care.

She said training and workshops had been developed in palliative care and leadership. These included sessions specific to disability care and support.

I can’t think of many professions in which an introduction to your client or customer includes an apology. I suspect mine is one of them.

“Hi, my name’s Jason. I’m one of the doctors. I’m sorry I’ve kept you waiting for so long.”

I find myself apologising to almost all of my patients as a way of introducing myself. My job title is senior house officer in ophthalmology – that is, I am a “senior junior” doctor. It’s taken me more than 10 years since I finished high school to get to where I currently am, and I now run a busy eye clinic in a tertiary public hospital with just one other colleague. We receive referrals from GPs, emergency doctors and optometrists and patients are welcome to walk in. Some patients have had chronic red eyes for months with no explanation. Others have woken up suddenly blind in one eye, while some have been brought in by ambulance from work after getting hot concrete, battery acid or a nail into their eye.

A typical day at work for me goes like this:

My first patient of the morning is a review patient – he came in earlier in the week with an infected ulcer on his cornea as a result of wearing his contact lenses overnight. He is responding well to treatment. My second patient is another review, this time for anterior uveitis, a condition in which the immune system mistakenly attacks tissues within the eye. She is responding well to treatment also. I write her a written treatment plan and organise to see her in another two weeks. These consultations take only 10 minutes and I secretly hope that every subsequent patient will be this quick. But for the patient, to see me for just 10 minutes, they need to take the morning off work to drive to the hospital; queue at reception to be registered; queue again for the nurse for an initial assessment; and then wait to be seen by me. They often need to stop by a pharmacy on their way home. This whole process takes hours out of their day and I often need to see patients multiple times over a month before I can fully discharge them.

The worried-looking nurse enters my room and tells me of a patient who has just arrived, complaining of blurry vision, headaches and vomiting. I have to assign priority to this patient over the already-full waiting room at 9am. I examine this young mother of two and find that her optic nerves, the two data cables that connect each eyeball to the brain, are swollen and look angry. I can’t let this patient leave until I’ve proven that this isn’t being caused by a tumour in her head. To fully assess her, I need to insert a cannula, organise urgent blood tests, request a same-day CT scan from a radiologist and organise her to be seen by a neurologist. All of this has taken over an hour, and meanwhile, all of the patients from the morning are still waiting. The receptionist reminds me that I have three WorkCover certificates to fill out and a patient is on the phone asking about the results of his tests.

I continue to see patients, apologising to all of them as I introduce myself. Almost all of them take it well. A small number, understandably, are frustrated. Often they are in visible pain as they wait hours to see me. As late afternoon approaches, I haven’t had lunch yet but there are patients who have been waiting five hours to be seen. I’ll just have a bigger dinner when I get home at 8pm. I have lost two kilograms in the last month.

The nurse brings me three charts for patients who left the clinic without waiting to be seen. The referral letter for one of them says that the patient has noticed double vision and a misalignment of his eyes – if this is caused by an aneurysm, which can rupture in a matter of days, the patient could die. I ring his mobile and leave a message after nobody answers.

It is usually impossible to keep to a schedule because medicine is complex and the needs of patients cannot possibly be met in the fixed time period that the schedule permits us. Quality patient care comes first and that inevitably means that serious or unexpected problems will occupy more time and make us run behind schedule even further. As much as we try to work in a timely manner, emergencies and high-priority cases will inevitably occupy us as well as calls to and from other specialty units for advice. Many patients have complex, difficult-to-manage conditions that require the input of multiple doctors. And doctors are only one link in the chain of healthcare for every patient. To run on time requires a large number of often unseen team members doing their jobs well, such as the receptionists, the nurses, the pharmacists, the radiographers, the wardies transporting patients throughout the hospital, and so on. A delay from any one of us can result in a delay for everyone else.

I could try to see every patient faster in an attempt to keep everyone that little bit happier, but to do that would be unsafe. Mistakes will be made and fine details could be missed. I would be practising negligent, irresponsible medicine. To practise medicine requires an oath to do no harm, whether by act or omission. Errors and mistakes in medicine can cause pain and suffering or cost lives.

So the solution is that patients sadly must continue to wait as we constantly run behind schedule. I’m sorry for making you wait for so long, for having to pay exorbitant parking fees and parking fines, and that you probably had to take an entire day off work just to see me. But if it allows me to do my job safely, hopefully it will have all been worth it.

* Jason Yosar is an ophthalmology senior house officer working in a Brisbane public hospital and an Associate Lecturer at the University of Queensland School of Medicine.

We need more choices for the Elderly to receive aged care services at home. Consumers are used to shopping around for the best electricity and phone deals.

Now people who receive aged-care services in their home will be able to do the same. Recipients have a far greater control over which provider delivers the services they need – in a manner they are happy with, cost effectively.

Increasing Choice in Home Care reforms started February 27. If someone with a home-care package is not happy with the service, they should be able to switch more easily.

The changes mean funding for a home-care package is allocated to eligible consumers. This replaces the old system where home-care places are allocated to individual approved providers. These services delivered only to services in a particular location.

In theory, consumers should have true choice as to what services they get to help keep them at home. As long as it is done through an approved provider and fits within the budget. Consumers can top services up using private funds.

For Barbara Leonard, 73, the ability to change providers couldn’t come soon enough. She needed the type of care that kept her husband David, 78, at home, following a massive stroke.

Since December 2016, David has been entitled to a level-four home-care package. This covers a range of services including specific equipment, physiotherapy and personal care.

There was nothing particularly wrong with the initial provider they engaged. However, it was unable to deliver the choice of carer they so badly needed.

“A friend of mine told us to get out the iPad and look at bettercaring.com.au [an online market marketplace that connects consumers directly with local, independent care and support workers] where we could choose our own carer. David immediately chose Rosa and she has been fabulous,” says Barbara.

“Choosing who comes every day gave David more autonomy and control. That has made a lot of difference to him,” she says.

Where one provider was unable to provide the flexibility needed to access a service like bettercaring​, the other was willing to find a solution.

More competition

The reforms have also opened up the home-care market to new approved providers as a way of offering greater choice for consumers who can receive care packages with budgets between $11,693.65 and $52,545.40 a year depending on a person’s care needs.

Ku-Ring-Gai Neighbourhood Centre (KNC) is one of a hundred or so new approved providers, having changed its status from a community support provider.

KNC chairman John Bagley says the new system allows for a more flexible and cost-effective case-management fee for consumers and greater choice of care.

“Clients’ needs can vary from high care or needing to remain socially included with friends or attending long-standing commitments, such as theatre subscriptions, church or hobbies – all of which are as valuable to the client as domestic assistance,” Bagley says.

A Department of Health spokesman says people approved for a home-care package by the Aged Care Assessment Team from July 1, 2016 will automatically be placed on a new national queue for home-care packages.

Consumers who have an approval before July 1, 2016 will need to opt-in to the national queue by advising – via the Government website myagedcare.gov.au or the contact centre on 1800 200 422 – they are actively seeking care.

A person’s place in the queue will be determined by their needs and circumstances and the time they have been waiting for care.

Consumers must personally advise My Aged Care if they want to go on the national list, unless they have nominated a representative such as a family member to make inquiries on their behalf.

Under the reforms, the four levels and types of care and the required assessment to access home-care packages will remain the same, as will fees, supplements and the existing consumer-directed care model. Details are available on myagedcare.gov.au.

In addition to a basic daily rate of $9.90 a day, package holders are income assessed to determine what further contribution they could make to the package, if any.

With reports of case management and administration fees costing up to 45 per cent of an individual’s package, many consumers are keen to see these charges drop and service delivery rise.

Canberra resident Helen Ryan**, 81, has been on a level-two home-care package for seven months.

With her care needs rising, she is awaiting a letter to confirm she has been allocated a level-four package under the new system before she makes a final decision on whether to look for a new provider.

Her complaint is not with the services she has been getting but the lack of transparency around costs of services. Her 12 hours of cleaning and a few trips to the shops is costing about $986 a month including administration and advisory costs even though she elected to self-manage her package.

“I know I am not paying it, the taxpayers are, but having always carefully budgeted my own money I feel these costs could potentially be the difference between good or just average care,” Ryan says.

It is difficult to have faith in the system when the cost for changing a small light fitting was $220, she says

“That equals about four hours of my care. If I really had control of my package I would be given the opportunity to accept that charge or find someone else myself who could do it cheaper. Now I might have to miss out going to the shops or getting some transport,” Ryan says.

Exit fees

One thing to watch is the newly introduced exit fee, which a provider can deduct from a client’s unspent funds to cover administrative costs if they choose to move providers. These must be disclosed in the Home Care Agreement and displayed on the My Aged Care Website.

So far known maximum exit fees range from $0 to $1000. The concern is they could deter someone from moving.

“There is no real issue if the fee is a basic sum of administration, but if it is of a size that it is a deterrent to someone who wants to change providers, then that is unconscionable,” says Council on the Aging chairman Ian Yates.

Sydney University associate professor in ageing and health Lee-Fay Low says to pick the best home-care provider package holders must first figure out their needs – for example, a language other than English or a specialty in dementia – and then look for a provider who meets those needs.

Low also suggests looking for providers whose staff have higher levels of training and to ask about the average percentage of government subsidy available for clients to spend after fees.